FPWR Blog

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2019 totaling $786,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $12,000,000 to research since 2003.

A new study is now enrolling people with PWS ages 13 to 30 years old and their caregivers to participate in a study to evaluate the use of Mindfulness-based intervention for the treatment of temper outbursts. A live webinar was conducted May 6th which shared details of the study, what you can expect if you choose to participate, and eligibility criteria for participation. The presentation is about 15 minutes in length, followed by 10 minutes of Q&A. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript and slides from the presentation below.

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also watch the full set of conference videos on YouTube.

The PWS-Clinical Trial Consortium (PWS-CTC) met with FDA on November 19th for a 90-min session, to discuss the progress made in the last three years to overcome clinical trial challenges in PWS. With an increasing number of clinical trials in PWS, it is a critical time for the FDA and industry partners to fully understand the unmet medical needs and the impact that PWS has on those with the disorder and their families.

Gillian Segall is an 18-year-old high school senior from Chicago, IL who happens to have PWS. We asked Gillian to tell us a bit about her life as a high school senior and her plans for afterward.

Graduating from high school is something that many kids and their parents take for granted. But I’m a kid with Prader-Willi Syndrome so my journey has been full of ups and downs. The “ups” have been amazing: I will be graduating in May, made my high school honor society, was named a “True Giant” for making my school a better place, and also qualified for state Special Olympics in swimming. But the “downs” have made it really hard to get here.

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also watch the full set of conference videos on YouTube.

A new study, ZEPHYR, is now enrolling patients ages 8 to 65 years to determine the safety and efficacy of livoletide for the treatment of hyperphagia in PWS. A live webinar was conducted on April 16th sharing details of the study, what you can expect if you choose to participate, and eligibility criteria for participation. The presentation is about 20 minutes in length, followed by 15 minutes of Q&A. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below.

Are you a new parent to the Individualized Education Plan (IEP) process and seeking to understand the journey ahead? Or a veteran to the IEP process and seeking tips and strategies to ease the experience?

Main Menu

Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High-quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burdens of PWS, allowing them to lead full and independent lives.